After three years of campaigning for dyslexia awareness and building our community (thank you, Meriah Houser!), Decoding Dyslexia Arizona is taking an important leap forward this fall by initiating the public policy changes our state needs to enable all children, especially the 1 in 5 with dyslexia, to learn to read. To support our efforts, today we are excited to launch our new website and, along with it, our blog. My name is Jenifer Kasten, and I am DDAZ's new Advocacy and Public Policy leader. I will be blogging about our community's efforts and priorities and would like to use this first blog post to tell you why I've decided to become involved with Decoding Dyslexia Arizona.

Our family's storyMy daughter, "M," was one of the lucky ones. A very wise mom who had raised a daughter with dyslexia through adulthood noticed during M's pre-K year that she showed signs eerily similar to her own daughter at that age. We brought M for a private evaluation and learned that she was "at risk" for dyslexia. We began providing her with the recommended Orton-Gillingham method of instruction when she turned 5, and when she turned 7, we had her privately reevaluated. This time the diagnosis was clear: no longer simply "at risk," M had dyslexia. She continues to receive private instruction and she is still reading at grade level. (As a parent contributor for "LD Insights," the blog of the National Center for Learning Disabilities, I shared our emotional story -- feel free to check it out).

There is a saying"To whom much is given, much is expected." Some may know it from the Bible, others from Spider-man, but it is a principle that resides deep in my heart. I set out to learn as much as I could about dyslexia, how schools approach it in Arizona, and how I might be able to make a difference for other students. I became involved as a board of member of Raising Special Kids and as a co-founder of PEN Phoenix, fantastic, nonprofit organizations that support students with learning challenges. The more parents I talked to, the more I learned just how unusual our story of early identification and remediation for dyslexia really was. The more typical scenario seemed to involve kids who remained unidentified as having a learning disability until they were in the later elementary or middle school years, at which point they'd fallen hopelessly behind and had suffered numerous debilitating emotional and often physical reactions.Why was this happening? Why were students with dyslexia not being taught how to read? I thought that's what special education was for? Having attended law school and spent many years practicing law before becoming a stay-at-home mom, I set about to try to learn what federal and Arizona law required with respect to students with dyslexia. The answer was startling: nothing. Although both federal and Arizona law require schools to evaluate and provide special education for something called "Specific Learning Disability," which can include dyslexia, the laws neither define dyslexia nor require that schools provide the type of reading instruction known to work for students with dyslexia. This is the case even though we now know that 80% of students in the "SLD" category actually have dyslexia!

As a result, when a parent of a struggling reader mentions dyslexia -- or even brings in the results of a private evaluation finding a dyslexia diagnosis -- public schools in Arizona typically respond by rejecting the report, with the explanation, "Arizona does not recognize dyslexia." These students may (or may not) be provided services for what the schools call something like "Specific Learning Disability - Reading," but the instruction is not based on the methodology these kids need. The most frustrating part about this situation is that parents often have absolutely no idea that what the school is offering is grossly inadequate -- until it is far too late.

Tell us your storySeveral other states around the country have enacted very specific laws guaranteeing students with dyslexia the "free, appropriate, public education" required by law. Arizona is woefully behind the times, and we all need to work together to catch up for the sake of our children and our future. Although you may feel powerless against "the system," you can make a big difference simply by telling your story. Personal stories are powerful, because they create the sort of emotional connection that will spur people to action. So in the comments section below, please consider sharing the ups and downs of your journey. Is your child a struggling reader? Does he or she have a dyslexia diagnosis? What is your school doing to help? What sorts of changes would you like to see? Together, there is no limit to what we can accomplish for our kids, and that is why I have joined Decoding Dyslexia Arizona.

My son, “J,” was born in late August and as a toddle had some bowel issues. So when it came time to start thinking about school I knew we would start Kindergarten when he was almost 6. So as he approached turning 5 I enrolled him in Pre-school. Let me say we were blessed and had one of the most loving and caring pre-school teachers ever! As that year went on she would tell me that “J” was showing some delays and she offered ideas of things we could do at home (i.e. fine motor, gross motor, and most important he just did not seem to get his letters). So as any mother would do I made it my goal to teach him his letters but by Christmas no progress seemed to be made and now the behavior was really starting to show its ugly head!! Now let me stop for a minute and say that he had been seen by several doctors who told me at this point he was just showing some mild Developmental Delays and would more than likely grow out of them! But as a Mom I knew something was going on so I pushed on. I had him tested at the school he would be going too kindergarten and low and behold he was labeled Developmental Delayed and placed on an IEP for Behavior, OT and Reading. Now I thought I had won the battle now my Son was going to get what he needed but by the end of Kindergarten still not reading and he was just getting his letters down forget about the sound they made!
Everybody loves my son, “J” he has lots of friends and has NO trouble making friends wherever we go. “J” does have some sensory issues and he is kind of particular about food and how things are done but it has never seemed to really matter to his friends. First grade had some ups and downs I had several meetings with the school and his team was always telling me he was making progress but the strange thing was I did not see it as much as they did. I kept on working with him at home and had him going to therapy at Piller Child Development once a week. First turned into Second grade and I was starting to see a different kid.
The transition into Second grade brought on a six week run of bad behavior with calls from his new teacher, his resource teacher and even the school Phycologist. He would tell me every day he hated school and I could not blame him! As a mother I felt as though I had failed my child! The IEP that I thought was my golden ticket had not gotten my son any closer to reading! I was at my lowest and did not know what to do or how to help my son. One night I was on the computer and I found Decoding Dyslexia and I Facebooked Meriah Houser and she messaged me back the very next day! She set up a time to talk to me and with her guidance I was able to get my son diagnosed finally and yes he is Dyslexic. Now deep down I knew he was I have a family history of Dyslexia, my younger sister (she is 11 years younger than me) is a Diagnosed Dyslexic who did receiver service when she went to school and now that I have watched my son struggle I am sure I was or am Dyslexic.
So where are we today? My son, “J” is now in Third grade and is only reading at a beginning first grade level. When I gave the school the Diagnosis at the end of Second grade I was told it does not change the service he is receiving because they do not have specific IEP for Dyslexia. They will continue to service him for his Learning Disability. I was shocked and heartbroken but I knew that is how they would respond. I was again a Mother on a mission. I was able to get “J” into a 10 week summer program using the Barton reading program. When we started the summer program they tested him and told me he was reading at a kindergarten grade level remember I said he was now going into Third grade but he is almost 9 years old because I started him late! He has been receiving services at his school under an IEP since Kindergarten and is still only reading at a beginning first grade level!! But in just 10 weeks “J” completed the first 2 levels of the Barton program and as the school year starts we are continuing with the tutoring! He is lost at school and in a classroom where he cannot do most of the work! Most of his friends have moved on to a higher level class. He is pulled out 3 times a day for his resource class for reading, writing and now math (thanks Common Core)so what is he missing when he is not in his class? My fear is that if things do not change he will continue to fall further and further behind!!
As a Mother I can tell you my son is amazing, unique and smart!! My son cannot read but despite that he has found ways to continue to move forward he figures it out. But I want more for him I would gladly continue to pay for tutoring if in the end he can read better. But I ask myself everyday if they say “No Child Left Behind” what about mine?

Reply

Tracy Abdoo

9/17/2014 02:38:53 pm

Jessica, thanks for posting. I feel the same way! I am so frustrated. Just as I think I am getting a handle on things, something else comes up. My heart just breaks for my children and I feel helpless! I have a 9 year old that was diagnosed and a 7 year old that will be tested soon.

Reply

Jenifer Kasten

9/18/2014 04:17:17 am

Hi Tracy,

It is truly a heartbreaking and helpless feeling to watch your child struggle and suffer this way. But there is strength in numbers. We are not alone! Hang in there.

Jenifer Kasten

9/18/2014 04:15:30 am

Hi Jessica,

Thank you so much for sharing your incredibly painful story. I wish so much there were something I could say or do right away to make things better. I hope you know that you are not alone, and that by joining forces, we parents can and will make things better for our kids.

Jenifer

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Laura Pennix

9/24/2014 08:55:34 am

Thank you for sharing your story here. My husband was on an IEP all through out his education and NEVER received the help he needed. Now, as an adult, he still struggles everyday. Literacy issues are just the tip of the iceberg. The emotional effects are so devastating. I encourage you to keep advocating for your child. Our children deserve better!

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Laura Pennix

9/24/2014 01:10:10 pm

WHEN HELP NEVER ARRIVES......................................
Until this past February, I didn’t know a lot about Dyslexia. (Or so I thought!) I know my husband, John, very well though. When we first met more than 20 years ago, I knew there was something amazing and special about him. He was a great father to his son, a loyal friend, dedicated hard worker, and had a kindness about him. I also knew that he was a person that had a learning difference. I could tell that he was unique, highly intelligent and had developed brilliant compensatory strategies. To this day, I have never met anyone quite like him.
During his formal education, John was placed on an IEP and shuffled around from school to school in Tucson, Arizona. He attended about 7 schools in all. He graduated high school in 1988 and was handed a diploma. He graduated without being able to read or write. He also had no real idea about the origins of the LD he struggled with daily.
Besides literacy issues, John would frequently have trouble with verbal communication. This was more noticeable when he felt pressured or had anxiety. Ordering at a drive-thru was difficult. He had trouble with directions, such as right, left, north and south. When we were dating, he missed Thanksgiving dinner one year. He could not find his way to my mother’s home. Trying to follow a sequence of tasks was sometimes difficult. We had many unseasoned BBQ hamburgers, because he missed a step. (They were still delicious!) Navigating on a computer was difficult too.
Try as I might, I was not able to convince John of his brilliance. You see, the world he had been struggling to live in already convinced him otherwise. In fact, there were many times he asked me “Why am I so stupid?”, “Why am I so dumb?” or said things like “There are smart Dads out there, but not this Dad.” Of course, I would do my best to explain how smart he truly was. He came up with strategies to overcome a LD all on his own! He was very successful in the trade he worked in because of it. It made him an “outside of the box” thinker and problem-solver.
14 years ago, John was offered a professional career opportunity. He would be installing aircraft interiors. He had great mechanical ability and it seemed a natural fit. After a few weeks on the job, he came home very upset. His literacy issues were affecting his work. He agreed to his employers request and attended twice a week tutoring to improve his literacy. He has done so for the past 14 years. The literacy group tutoring John does not offer LD specific curriculum. His ability to read and write has improved only slightly, but he has not given up.
About a year ago, his job expectations changed. When this happened, it brought back all the feelings of inadequacy John had struggled to overcome all his life. He desperately wanted to improve, but had no idea what could help him to do so. He asked if I would look online. Initially, I looked for adaptive technologies. Eventually, I searched the internet using his challenges as search terms. Lo and behold: Dyslexia. A neuro evaluation confirmed it months later.
So, at 45 years old, for the first time in his life, my husband finally understands that he is a person with dyslexia. And now, I understand too.

Reply

Grieving and Frustrated

3/1/2017 11:36:56 am

Laura, as parents of a dyslexic 15-year-old son, we hope and pray that he would find a wife as caring, loving, and loyal as you! You've given me hope just by letting me know that there are women out there who would be so supportive and understanding of their husband's struggle. Dyslexia has been emotionally devastating to us and our son and it's such a relief to know that out there somewhere there might be a good woman with such kindness in her heart as you have shown. Our son is just like your husband - sweet, friendly, competent and dependable in so many other areas besides reading and writing. He has the same struggles with directions, verbal communication, and following a sequence of tasks, but he also has developed brilliant compensatory strategies! In fact, when he was pre-verbal, at age 3, he had invented his own sign language to communicate with us! He has a sweet, sunny disposition, with unlimited patience. That's why it breaks our hearts to see that patience and sunny outlook be crushed by his failures at school. It's not even the end of freshman year in high school and he's already given up, in spite of the resource help available. I mean, really, what 15-year-old boy wants to let anybody know that he can't spell 3 and 4 letter words?! Thank you for posting.

Reply

Grieving and Frustrated

3/1/2017 11:53:54 am

My son benefited greatly from the slower pace and one-to-one instruction of a self-contained special ed class. His elementary school years, for the most part, were very positive and he made great progress. High school is totally different. In the entire Valley there is not a single public high school with a self-contained program for students with learning disabilities. Only one high school in the greater Phoenix area has one and it is only for autistic kids, or kids who have behavioral and emotional challenges. Why? Don't educators realize that many behavioral and emotional challenges are the direct by-products of the intense frustration, isolation and despair caused by not being able to ever learn how to read and write? Surely as "professionals" they must know, they must see, the direct correlation between Specific Learning Disabilities and the high school drop-out rates? The Arizona education system has done well to provide free busing to self-contained programs for the elementary school population, but it could and should do the same for the high school population. Mainstreaming and integration with resource have not served our son well. There is not enough structure and support which are crucial to a kid with SLD. Please, Arizona, please! Help these kids not to fall through the cracks!

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Jenifer KastenParent of child with dyslexiaDDAZ Leader of Advocacy and Public Policy

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